Science shows that people of color are nearly twice as likely as their Caucasian counterparts to develop some form of dementia. And yet African Americans are consistently under-represented in Alzheimer’s studies. So geriatrics physician Dr. Monica Parker—whose mother and grandmother both suffered from dementia—doesn’t mince words when she’s doing community outreach for Emory’s centers on Alzheimer’s Disease Research and Brain Health. She’s been known to ask: “If you were diagnosed on the dementia spectrum tomorrow, which of your relatives would take care of your business affairs?” She then adds: “Who’s going to help you with more personal needs, including getting you in and out of the bathtub and wiping your derrière?”
Says Parker: “It tends to get a reaction, but that’s the point. We’re Baby Boomers. We think we’re going to live forever. We never stop to consider living forever with an impairment.”
For the past eight years, Parker has worked to foster relationships with Atlanta’s African American churches (including Cascade United Methodist Church, where Alzheimer’s day programs and support groups are now being developed) and historically black sororities (including the Atlanta chapters of Delta Sigma Theta and Alpha Kappa Alpha). A chief goal: persuading minorities to enroll in Emory’s Registry for Remembrance, which aims to educate African Americans about the disease and recruit them for long-term studies.
Parker says getting those of a certain age to consider joining research studies can be an uphill battle. “These are people who were alive during the Tuskegee experiments of the 1930s or grew up hearing about them from their parents,” she says. “African Americans, especially those raised in the deep South, are certainly more attuned to injustice and unfairness—and rightfully. They have a lingering suspicion of academic research centers.”
Another challenge: explaining the intimate connections between dementia and other chronic medical conditions like diabetes, high cholesterol, and hypertension. Basically, it all comes down to blood flow to the brain. “So many people say, ‘I don’t want to hear about diabetes,’” says Parker. “My response is, ‘If you don’t control this chronic disease and keep it in check, it will ultimately affect how your brain works later in life.’”
Thanks to Parker’s efforts, people are listening, and more importantly, they’re telling their friends. The community educational sessions she hosts at the Carter Center have already outgrown their original space as hundreds of aging residents sign up to attend. “Our meetings have mushroomed,” she says. “We’re seeing a lot more community participation in our research projects. It’s critically important data for us.”
Though Parker stresses, “I didn’t get into this work because of my personal acquaintance with this disease,” she believes that “hopefully, I’m more sensitive than someone who hasn’t had those experiences. It certainly makes me more motivated to take care of my own health. There are age, gender, and genetic factors with this disease that you can’t do anything about. But you can change what you put in your mouth. You can choose to be more proactive about going to the doctor. When a patient or someone I reach in the community chooses to age more healthfully, that’s a good day for me and this work.”
This article originally appeared in our September 2016 issue.